Your Family and Stages III and IV Breast Cancer

Finding out that you have breast cancer and telling your family about it can be very hard. If tests show that you have stage III or IV, those talks can be even more challenging.

It’s not just about information, like what your stage means, what your treatment options are, and what you want to do. You may also need to talk about tough emotions that may come up for you, your partner, and even your children.

Many women have been, or are right now, in the same situation. You may be inspired by how they used these conversations to make a big difference to the whole family.

Breaking the News

The first person that most people tell is their spouse or partner. They will ideally be at the doctor's office with you when you get your diagnosis. But sometimes, that doesn’t happen.

Adair Palmatier of Red Wing, MN, found out that she had stage IV breast cancer in 2014. She happened to be alone when her doctors told her. "My husband had lost his mother from cancer when he was very young, so I didn't want to tell him," Palmatier says. Despite her qualms, she told him right away.

That was a good decision, says Susan Fugett, a clinical social worker at the Ohio State University Comprehensive Cancer Center.

"I always encourage patients to be honest with their family. When you're trying too hard to guard and protect them, it can get in the way of the conversation" and your own well-being, Fugett says.

"It's OK for them to be sad,” Fugett says. “You need to allow them to have their response."

How you tell other adult relatives can depend on your relationship with them. You may want to tell your parents and siblings directly. Or you can ask your partner or a trusted friend to do that.

For more distant relatives, it’s OK to take your time. You might not want to do it all at once. “It can be too emotional for a patient to retell over and over again," says Liz Farrell, a social worker at Dana-Farber Cancer Institute. She suggests using websites like Caring Bridge, Post Hope, or Care Pages to update friends and family about your condition.

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Telling Your Children

Katrina Cooke's sons were just 3 and 6 when she was diagnosed with stage IV breast cancer in 2011. As scared as she was for all of them, she decided to tell her boys what was going on right away.

"I sat them down and told them I had been diagnosed with something called cancer," says Cooke, who lives in Creedmoor, NC. "I said it meant I had a tumor, which was like a rock in my breast, and that it was a bad rock that would make me really sick. I explained that I was going to get medicine through my veins to hopefully melt the rock away, and that I might lose my hair and sometimes might not feel good. I also told them they might see other people crying, but that's OK."

Cooke's approach was both straightforward and age-appropriate, Farrell says. She strongly encourages people to use the word "cancer," even when talking to young children. "It's much scarier if you don't, because they'll inevitably hear it from someone else and they'll start to worry about why they weren't told," she says.

Sharing Your Reality

Each person with cancer is different. You can help your family understand what cancer means for you.

Not everyone with breast cancer gets surgery or chemo, for instance. Stage IV can be especially hard to explain to loved ones. "Even close family might not understand or be willing to accept that it can't be cured, and that you'll always be on some type of treatment," Farrell says.

Some family members may fear that you're dying. It may help them to know that some women live with stage IV breast cancer for a decade or longer. And with stage III, you may have even more time than that.

The best you can usually do, Farrell says, is to be honest about what your doctors have told you. If it's your young child who asks, you may want to say something like, "That's not what we're worried about right now, but if it seems like that might happen, we'll talk more about it," Farrell suggests.

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Enlisting Support

No doubt about it: Cancer will change your family’s life. It helps for you to be very clear about what you want and need from those who are closest to you.

"I encourage people to spell it out, because even your partner can't read your mind," Farrell says. "You might need to say, 'What I really need is for you to do the laundry on Tuesdays and pick up the kids on these 3 days.' " She also notes that your needs are probably going to change.

If you have stage III, you might be out of action for a while, then back to your normal routine within a few months or a year after you finish treatment.

With stage IV, you might need more help. Or you may have times when you feel better and can handle more things at home.

"It's important to be constantly revisiting these issues and talking about what's best for your family," Farrell says.

Whether or not you're coupled up, you’ll want to let others support you. Cooke, who's divorced, says her sister offered to let her move in before she got surgery and radiation. She accepted, though it wasn’t easy. "It's not natural to allow people to help so much when you're used to being independent,” Cooke says. “But I think you have to learn how to accept help."

Talking About Your Wishes

Breast cancer treatment has come a long way. But some women find peace of mind in talking about the thing most people don’t want to talk about: What happens if your treatment doesn’t work, or if you’re ready to stop.

You might have a type of stage III that your doctor says is often curable, but you feel better talking with your family about what happens if it turns out not to be. Or maybe you've had stage IV for years, have tried all your treatment options, and feel ready to look into hospice.

Palmatier has found a silver lining in having these tough conversations. “Talking about it was actually taking my fear away," she says. By telling her family what she wanted and writing it down, “I felt like now there's a plan,” she says. “Now I can just put it aside and focus on living.”